Fran Zilko posted a note for Timothy that says:
Wow, it finally happened!!!! So happy for you that all you endured is over with this new heart Bless the family that made the decision to donate a loved one's heart. You are an inspiration to many people, maybe more than you know. Wishing you a long healthy life to enjoy your family.
Theresa C. posted a note for Timothy that says:
So very happy for you! You are an inspiring man! Prayers for continued recovery, and a beautiful life ahead. I am sure your family is thrilled. I wish your journey was not so challenging, but you definitely rose up and met it! Prayers will be sent your way.
John O\'Neill posted a note for Timothy that says:
I am on my fifth year of ticking and luckily have only had a few minor complications.
My daughter in law lost a brother to a severe brain injury a number of years ago. He was a donor. His family has found a lot of comfort in the fact he has given the ultimate sacrifice for others. This year his family helped organize Trails for transplants trail ride from Warren MN to near Bismark ND. They raised over $40,000 for the transplant house at Mayo Clinic in Rochester, MN. They have met the recipient of their brothers heart and have found happiness in the fact their brothers heart lives on.
I pray that you can now return to a better quality of life than pre valve problems as I have.
Alex V posted a note for Timothy that says:
It is great to hear you received a heart and doing well. I followed your journal as I flew to Duke from Denver,CO and had Dr Glower do MIS aortic valve replacement. Good luck with your recovery and we will continue to send prayers and good thoughts your way for a speedy recovery.
Jerry H posted a note for Timothy that says:
Hi Tim, I have not been on in ages and saw your post about the transplant. I am bummed to hear you are going through this. Your posts helped me when I was getting ready for my AVR in 2010. You are in my prayers buddy.
Can't begin to imagine the thoughts that go through your head when you're told you're finally on the list, but you are right when you say you will get better. I saw a special on tv about a teenage girl's heart that was transplanted into a man. After a certain amount of time the mom was able to learn who received her daughter's heart and they met. She put a stethoscope to the heart and listened to hear daughter's heart. I cried it was so moving. Yes, it is a gift you will be given and if you are on the donor list you were willing to donate also. You are in my prayers as you make this journey.
I decided to check the journals and noticed your posting. As others have stated, you are in my thoughts. I wondered how you were doing, and am sorry to hear about your latest health challenge. Please know you are in my prayers, and hope you overcome any others you face. Stay strong!
You are in my prayers. A few days earlier am sure you thought things would be better and you had a bit more time. Sounds like your medical doctors are right on top of things. Will wait for your next update.
So glad that I found out about your journal on this website. I've been praying for you. Although I'm sure you would rather be home, it sounds like you're right where you need to be. Hang in there. --Cheryl Ivey
Glad you are still here! Your experiences are a book of their own. Please explain how the pacemaker works for those of us who have only heard of them. I thought they were to just keep your heart beating at a certain rate when the heart gets too slow but you were making it sound as if the pacemaker was giving you jolts. It would be informative for all of us.
Like you I have given several future valve patients the information about this site.
I look forward to future postings and will keep you in my prayers.
So glad to get an update from you. Have thought of you often and wondered what your status is. Looking a bit better I see. I assume spring is bursting forth in NC, it's a beautiful time of the year. Keep checking in.
Fran from FL.
Hey Timothy! I was diagnosed in 2010 with a Bicuspid Aortic Valve. I've seen 2 Cardiologist in the Greensboro area for the past 2 years. Today, after looking online for the best doctor, I scheduled an appointment with Dr. Bashore at Duke. I am 29 years old and I know surgery in is my future and would like Dr. Bashore to start following me now. I have an appointment on April 10th and I hope he will answer all my questions and give me good news. Thank you for your story.
I'm so sorry to hear about the tough journey you are still on and will keep you in my prayers. I applaud your strong faith and obvious belief in your secure family relationships to help carry you through. No doubt you have many down days filled with lots of uncertainty and it's good to be able to handle the worry to God and yes, go to Disney! Cheryl, Ontario
I'm so sorry to hear that! I can't imagine how you feel, but I will keep you and your family in my prayers. I know God will finish what he started with you by restoring your heart. God bless you!!!!!
You are an amazing person. You have every confidence in your doctor and that will help you to have the knowledge you'll need to know the best timing for this surgery. Apparently no one knows why this deteriation is occurring? Are you a man of faith? I've always known that my faith would get me through some tough times, and it has. Keep us up to date. In the meantime, enjoy Disney LOL.
Really sorry to hear about your upcoming transplant. I have recently met a few people online that have had transplants and there are a few Facebook groups that can really offer support & encouragement - Zipper club, mended hearts, open heart surgery, all found in facebook. You will be in my thoughts and prayers. Stay strong, it sounds like you have really had an awesome attitude through all this. Fellow hvj. Roxanne dropko
Tim I can't imagine what you must be going through. I had OHS at three months and then last December to have my mitrial valve replaced. I'm 45. My sister in law had to have a liver transplant in February at the age of 39. She is doing well but yes it is a struggle as she has a toddler. I am telling you all of this so that you know you are not alone. Vent if you need to and we will listen to you and cry with you and recover with you. One last thing. One of my colleagues who is 62 had a pig valve replacement when she was 30. Eleven months later it completely failed and she had her second valve replacement in less then one year. This time mechanical. This was 32 years ago. She looks like she's 40 acts like she's 12 and makes me laugh everyday. She is one of my biggest inspirations because if she could go through OHS surgery 32 years ago twice in one year and be doing so well at 62 I know you can to.
Tim, I am so sorry you are having such a rough time. I agree with Ricki, I know Duke is a great place, but if I were in your shoes I would go to Cleveland for another opinion. It really is very easy to be seen there and they are ranked number 1 year after year. On a different note, I had a very dear friend who had cardiomyopathy that required a transplant. He has died now, but not from anything heart related. He had his heart for 10 years and never had a single problem. No rejection, no nothing...just much improved health and life. It is my understanding that the surgery itself is really not as complicated as some other heart surgeries. I am glad you posted, we are here to support one another! You will be in my prayers!
Linda Dixon, AVR 3/13/12
Life is not fair and you have been dealt a lousy hand. I do have to agree with Ricky about the Cleveland Clinic. They are still #1 for the 18th year. Even if they are in agreement with Duke, you might feel you haven't left any stone unturned. Has anyone talked about a heart tissue biopsy to see if they can determine why this deterioration is occuring? I'm glad you have some time and that will allow you to get mentally and emotionally prepared. You are in my prayers, please keep us up to date.
I sat here stunned......numb! I am so sorry your life took this path, but you have once again embraced and owned the path you are traveling down. You are a remarkable human being! You will have many prayers guiding you....I will remember you daily. Please keep us updated.....we care!!
Thinking of you,
I am so sorry to hear about your news. I am a cardiac RN and would have to agree with your last sentence and that you are not alone in this journey. Many people walk down the road your are starting. There is a great website called One heart two lives that can offer you information and encouragement. http://www.twolivesoneheart.com/
Have you or your doctors talked about or considered a VAD (Ventricular Assisted Device) kinda like a battery pack that helps the heart while you are waiting to get your heart transplant? I am not sure if your a candiate for it or not, but it's worth question to ask your MD.
I wish you the best of luck in your journey. I will say a pray for you.
I have no words at how shocked I am to hear you're looking at a transplant. Unbelievable. I know you've been happy at Duke but with something so monumental, I encourage you to get another opinion just to be sure. I, of course, think you should get that at Cleveland (I was so happy with my treatment there and impressed with the whole place. I'd suggest contacting my surgeon Dr. Joseph Sabik who is the chair of cardio-thoracic surgery. If you hve questions about Cleveland email me at rickishine@gmail)
Please keep us posted about what is happening. You're in my thoughts and prayers.
You are a mystery. I had to Google pro-bnp to see what it is as I am not aware of it or that I have had this test done. I have been in congestive heart failure CHF a few times since my surgery, the most recent was in Jan. of this year when I was admitted with fluid in my lungs (no apparent reason). Hopefully, the test is incorrect especially based on the fact you are feeling so good. My cardio bases a lot on how I am personally doing, an important factor. While you wait, practice some relaxation techniques to keep your stress level down and I will offer a prayer for you. Will wait to hear your doctor's input.
About the bills from Duke, the insurance company has negotiated rates with the provider. The provider bills their standard rate and the insurance company pays the negotiated rate. Typically the amount paid is 40 to 50% less than the amount billed. But it is still a lot of money in your case.
My entry was not completed when I hit the "submit " button. Anyway, bottom line is you're doing well and that is a blessing. Thank you for the beautiful words, I am copying them and posting them where I can read them every day. Stay well.
Thanks for the update, obviously you are thankful you have very good insurance. If this procedure was done on someone like myself (on Medicare), the payment would be much less and the hospital writes off the difference. So, in my mind makes me think it is way overpriced to begin with.
Reading your story and posts were very interesting to me. I'm glad to have the bovine side of it. I have always known about my bicuspid aorta but it went severe this year. The doctor is hoping to stretch my replacement out till I'm 34. I too have gone back and forth about mechanical vs bovine. In all honesty I'd prefer the Ross Procedure at this stage of the game with a bovine valve as plan b but just don't know. Thanks for your helpful posts and will be looking forward to more.
Glad you're doing well but the price of the procedure? Unbelievable! Good thing that your insurance covers all but $1500, but still . . . That's a crazy amount in light of the fact that your (and mine and probably everyone else) had major, major surgery for much less.
Nice to hear from you again. Unbelievable the price of your procedure!!! I am glad the infection is under control with antibiotics. We are finally getting some HOT weather in NJ in the next couple of days....we were going to go to the Yankee/Redsox game, but decided it was going to be too hot.
Keep us updated,
Unbelievable the cost for the valve surgery and longer stay was less than this procedure. Have you asked for an itemized bill (they should give you one)? Just to make sure there's no mistake. I know your health is worth all the money in the world, but this is ridiculous! Glad you were able to take care of the infection, don't want to mess with that. Keep posting.
Beautifully said, Tim, beautiful, man! Glad you have your recent episodes behind you and congrats on celebrating the one year mark. Perspective is everything. Very few of us on the HVJs had bump-free surgeries and recoveries; certainly not me. But Jesus never promised us a "no bumps" life. "In this world you will have trouble, but be of good cheer, I have overcome the world. (John 16:33)" Praying that you have turned the big corner and are entering good health and restored strength.
It's something to celebrate, that one year anniversary. There have been bumps along the way, but without that new valve, seems your quality of life was limited. You summed it up perfectly in your last paragraph. You are an inspiration of optimism and courage. As Adam says, keep ticking (and smiling).
Congrats Tim on making it through the past year. Your were one of the first profiles I read when I got sick and I for one am glad you are still fighting on man. Here's to YEAR TWO with no complications buddy.
Your update is so much more uplifting than before and I'm really happy for you. I'm keeping you in my prayers that your solution has finally been identified and dealt with. I'm curious as to why you said this procedure was more painful than the original heart surgery? My husband still can't get used to his CPAP and it's a constant struggle to remind him to "suit up"! Good for you.
Am curious, were you using a CPAP before your valve surgery? One of my son in laws started on one a couple of years ago and it has made a world of difference to him. Glad you're doing well and you know for sure you can't sleep without it to stay healthy!! Isn't modern medicine wonderful?